Saturday morning, around 4 am, I awake, and hear him downstairs coughing. I go down, and crawl into the bed next to him while the care-giver helps make him comfortable. I do not know it at the time, but I now believe the transition from the hospital to our house exhausted him.
Think about it. He had been battling something since December 18th, trying to get it under control. On December 30th, he has 3 stents installed, and now must recover from that. His body has been battling PF. I can only guess his body is shell-shocked.
His energy is so low, I am alarmed. I think I am losing him. He won’t eat. He just wants to sleep, and needs assistance in getting comfortable. And his legs are restless.
Louise decides to stay home, battling her own exhaustion and mending herself. She calls my cousin Patty, and a few others. Dad and I “talk”, he concedes he has had last rites, and perhaps it wouldn’t be so bad if this was his time. I alert other family members, and I am beside myself as I think I am about to lose one of my best friends.
I see him every day at the office. He is never judgmental, always patience. Why have I not realized how close we were? My dad is not an emotional man. He is a business man. He takes pleasure in building things, including people, and operating a company. Our conversations were never touchy-feely, but generally about the business, politics, or economics. They were spirited and academic dialogues. I enjoyed them, as he is the only one I have these discussions with (most people aren’t interested in these kinds of spirited debates or laments).
Tears flow and flow. In between naps, we exchange few words, but all are aimed at preparing for the worst. He sleeps more. Roxanne, our care-giver, suggests Ensure, and Dan runs out and buys a boatload. We encourage dad to try some, and he does.
It’s almost as if he knows that he can choose to die, but if he chooses this and he doesn’t die, he could make things worse. So he begins to make an effort. He drank two ensures that afternoon, and ate a couple of nuts. I call people to say I see some improvements. We turn the TV on to the last half of a football game. Although dad doesn’t watch it, we talk in-between “rests” about the analogies between football and business.
Wendy comes in at 9, and the night shift begins. I continue to stay in the bed next to him, hearing every breath, every word, and making sure every need is taken care of. We sleep fitfully through the night, catching short naps.
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Post script (4/2/10):
Dad stayed with me for two weeks, moving home on January 22 (my birthday). He had made significant progress, but had suffered setbacks. The week after the above note was written, he started to eat again, savoring Costco’s Alaskan King Crab legs. He ate eggs, filet mignon, yogurt. Not a lot, but he was eating. He’d get up, and we’d even get him out to the main room once or twice. But the Sunday the 17th, he suffered nose bleed from the oxygen drying out his nasal cavity. We fought it all day, and it killed what little appetite he had. It would dribble, then stop. I finally called an RN, and as she was leaving, a huge clot of blood came out his nose. I couldn’t get her back, and I was panicking…was this a 911 emergency? a nosebleed? I call 911 and hung up. Thankfully, I called from the land line, and they called me back. I explained the circumstances and my hesitancy to the dispatcher, and he sent an ambulance. They cauterized the bleed at the hospital, and sent him home. That week, he had to once again rebuild his strength and stamina. I hated to see him go home, because I gave him special care I knew Louise was not able to give – for example, when they repositioned him in bed, instead of “dragging” him up, I would get on the other side of dad, and we would lift him – a much more comfortable experience. And he didn’t have a good TV in his room. But maybe the call of his home office would urge him to try to get better.
But he did move home, on my birthday, and I went on to the trade show, and when I returned, I went to see him. He was up in his wheelchair watching the MA returns? No, I think it was the state of the union address. He was sitting there alone, as Louise was in the family room watching it, so I pulled a chair up and sat with dad, holding his hand. The TV was kind of high, a little hard on the neck, but it worked. It was one of those old CRTs, and it was small, so when he was in bed and watching, it was almost too small. We couldn’t get the DVD player to play on it. Dan and I tried to figure it out, even with dad’s help. Louise finally agreed that I could call TV service people in. Dad had a sharp mind, and he needed stimuli. He couldn’t just lie there, day in and day out.
The service repair people were scheduled the following Wednesday. Also, I had remembered that dad liked orange sherbert, and he was enjoying that. Loved it. I was hopeful, although he continued to wave people off when they tried to feed him or encourage him to drink water. Tuesday, dad collapsed, and we later found out it was dehydration. I think we were both surprised that dehydration could do that, but at the office, he used to tell me that I was the one that had gotten him to drink more water. So how had I missed it now?
And I had to delay the TV people because it was all just too much for Louise. Which meant dad was going to go home to nothing-ness.
Another blow. He came home on Thursday, well hydrated, looking good, but by Friday was becoming listless. I called the RN who arranged for an IV fluid of liquids for the weekend. And if he was not eating by Monday, we’d do a tummy feed. There was a flurry of activity that Friday night, but I felt we were leaving him stable. I told the care-givers to not just ask if he wanted food, to bring the food. If he didn’t eat it, we’d just toss it, but if they ask first, he’ll wave them off. So just bring it.
And I had the RN tell Louise it was okay for dad to eat hot dogs. He’d been asking for them, but she worried about the sodium and nitrates. As the RN pointed out, he wasn’t eating enough as it was, so there was no worry he’d eat too much sodium or nitrates.
At times, it feels there is too much to tell, but I must get this out of me.
Okay, so Saturday, he has a rough morning, I am told. We got there at noon, and had secretly brought with us a new flat panel TV with a built in DVD player. He awoke around 1, and when I thought he was strong enough, told him we had a new TV for him. He said “well, let’s hook it up!”. Man, we went straight to work! Got it in and working in about 15 minutes. Watched “You’ve Got Mail”, one of his favorite movies, then some NCIS episodes. All in all, I think it was a good day – even a great day. And he had his hot dogs.
The call came at 5:30 the next morning. “That can’t be good” I said as Dan answered the phone. It was the caregiver calling, dad was in a coughing fit, Oxygen level at 35. Dan could hear dad saying NO NO NO in the background. The line went dead. We rushed over, they had already gone to the hospital.
At the hospital, they had put the tube into dad’s throat – Louise said it was miserable from what she could tell. They had him sedated by the time we were there. He stayed that way until the end.
At one point, Sunday afternoon, he was moving his head from side to side, as if he was agitated with the tube. I asked if he could hear me, and he gave me a short nod. I asked if he knew why he was there – he gave a brief shake of his head. I explained what had happened, and reassured him that we knew his wishes, and if he could just bear with us for a little longer while we figured things out, then we’d follow his wishes if that’s what we had to do. I told him Byron was coming, and go to a happy time in his memories – a picnic with the family, his first date with Louise, etc. I think he heard me, and he quieted down.
He was never able to breathe on his own again. We had hoped to get him off the tube Monday morning, but we could not get his oxygen level strong enough even with the tube, so that hope disappeared rather quickly.
Of course later that day the doctor told us that what we were doing were heroic measures, and we knew that was not what dad wanted. Louise had the legal power to make the decision, but she checked with me, and crying hard, I had to agree with her decision.
We went back into the room, and I explained to dad that we were going to get that nasty tube out of his throat. That we were going to leave the room for 10 minutes (at the doctor’s request), and when we returned, they’d take the tube out. That we would be there to help bring him back, or to send him to the Lord.
when they took the tube out, I said “You’re free now”, and “You have been strong for us, and we will be strong for you” and as it became clear he was leaving us, I urged him to go towards the white light (I don’t know why I believe this is what one sees when they cross over, but it’s what I believe), and find his loved ones.
I never did feel the presence of others, and I never have felt his presence afterwards. I had hoped to – I have read accounts where people feel the loved ones coming back, but that hasn’t happened for me.
I go to his site every day that I can, which is pretty much every day. I keep fresh flowers for him. We have now ordered his plaque, and I am excited about that. He is on the wrong side of the crypt, but there is nothing i can do about that right now.
